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March20 podcast Dr Hazen
anti-TMA pill in a year or 2 ? (scroll 12 mins)

Additional info: https://youtu.be/811v7RLXP9M
MEBO Karen
at UK Findacure conf 2020

Scroll down and select country
MEBO TMAU TESTING DISCONTINUED
(2012-2017)

MEBO Map Testing & Meetups


Full details : https://goo.gl/TMw8xu
want listed ? contact info@meboresearch.org

MEBO - UBIOME study 2018

'PRESS RELEASE'

NCT03582826
ClinicalTrials.gov

MEBO Gut Microbiome Study
"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"
Funded by uBiome Research Grant

"Microbial Basis of Systemic Malodor and PATM Conditions (PATM)"

Dynamics of the Gut Microbiota in
Idiopathic Malodor Production
& PATM

Started May 2018 - Ongoing

Current people sent kits : 100/100
3 kits per person

NO LONGER RECRUITING

Participation info : LINK English

MEBO Private Facebook Group
to join : go to
or contact
Join/Watch the weekly
BO Sufferers Podcasts

MEBO TMAU Videos

Petitions

TMAU Petition world
TMAU UK end total:262
TMAU UK ends 23/01/20
TMAU Petition USA end total 204
USA : Moveon open
TMAU (Dominican)
Metabolomic Profiling Study
NCT02683876

Start : Aug 2016
Stage 1 : 27 Canadian volunteers to test
Latest click here (26 oct) :
17 samples returned


Note : Stage 1 is Canada only.
Return cut-off date : passed
Analysis can take 6/8 weeks
Analysis start in/before Nov
MEBO Research is a
EURORDIS and
NORD Member Organization
See RareConnect
rareconnect.org TMAU

Popular Posts (last 30 days)

Upcoming get-togethers


Let us know if you want a meetup listed
Follow MeBOResearch on Twitter

Blog Archive

Denver TMAU Test Lab survey click here
click to Read more/less

USA survey for anyone who wants to improve Denver TMAU test

begun : Dec22
end : no ending for now

A trainee genetic counselor is working at the Denver TMAU test lab. Probably as part of her training. As a project she wishes feedback on any aspect of the Denver TMAU test and process. You can fill in the survey and/or email her (email address is in survey). It's meant for USA people, but perhaps others can give their view too (as we have so few opportunities).

quote from her rareconnect post

"Hello all! I wanted to make you aware of a research study being conducted to better understand the experience and needs of individuals with trimethylaminuria with a goal of being able to create improved patient and healthcare provider education materials. Any participation is completely voluntary and all responses remain confidential. Feel free to use the contact information within the link with any questions or share the survey with others with TMAU."

see this post for more details

https://www.meboblog.com/2023/01/denver-tmau-test-survey-tbc-who-it-is.html

PETITION Translations: MEBO International Raising Awareness Campaign




Português


CAMPANHA INTERNACIONAL DE CONSCIENTIZAÇÃO: VISÃO GERAL

Como parte da nossa Campanha Internacional de Conscientização e de nossos esforços em obter pesquisas sobre desordens que produzem odor corporal sistêmico, a organização beneficente MEBO Research lançou essa petição requerendo às organizações privadas e aos governos de todas as nações que aumentem os níveis de financiamento voltados para os vários tipos de desordens que causem odor corporal. Este requerimento inclui a Trimetilaminúria, embora não se limite a ela, uma desordem devastadora para a vida de seus portadores, com o propósito de que um tratamento efetivo e uma cura sejam alcançados.

Nós esperamos que, ao assinar esta petição, você esteja de acordo com a necessidade de se aumentar a conscientização, o financiamento e o tratamento para a Trimetilaminúria (TMAU) e outras desordens causadoras de odor corporal. Este é um problema muito mais comum do que se pensa. Por favor, junte-se a nós neste esforço.

O objetivo é atingir um mínimo de 50.000 assinaturas do mundo inteiro para serem entregues a legisladores do maior número possível de países, às Nações Unidas, a organizações médicas e científicas de todo o mundo e a instituições de ensino primário, secundário e de nível superior.

Por favor, demonstre seu apoio à nossa causa assinando esta petição.

Blog de MEBO (Inglês)
Blog MEBO (Espanhol)



Español

Mebo Research invita a todos los lectores de este blog, incluyendo las personas afectadas, familiares, amistades, y personas que apoyan esta meta a participar en la Campaña Internacional de Concienciación sobre enfermedades que producen olor corporal y halitosis sistémico, y para que apoyen los esfuerzos de conseguir investigación en este campo firmando esta Petición Internacional. Véase la traducción al español de la Petició más adelante en esta publicación. Al firmar este documento, sería usted parte de la solución - de cambiarles las vidas a todas las personas afectadas por todo del mundo, y de garantizar que nuestros hijos y los hijos de nuestros hijos lleven a cabo unas vidas despreocupadas y felices, sin el sufrimiento que estos padecimientos aportan.

Sólo su nombre, apellido y su dirección de correo electrónico son necesarios para crear su firma. Si desea mostrar de cuál país es usted, puede hacer clic en "Outside/Fuera de EE.UU.", y seleccionar su país de la lista o registre su país (en el caso de que no visualice la lista). Esta petición será un mayor testimonio de la naturaleza internacional de estos padecimientos.

Con el propósito de garantizar que esta petición esté disponible a los afectados de todo el mundo, se solicitan voluntarios que la traduzcan a cualquier idioma. También, se les piden que después le informen a MEBO, info@meboresearch.org en cuál sitio web, foro, o blog será alojada la traducción para presentarlo en la Petición original. Por ejemplo, la traducción al español se encuentra en este blog español de MEBO, Olor corporal y halitosis.

A fin de ayudar a los firmantes con un mejor entender de esta petición, la aplicación Google Translate se ha integrado en la parte superior derecha de dicho documento.

La siguiente es una traducción del inglés de la Petición:

Como parte de nuestra Campaña Internacional de Concienciación sobre enfermedades que producen mal olor corporal y halitosis sistémico y nuestros esfuerzos por conseguir investigación en este campo, la organización benéfica MEBO Research hemos lanzado esta petición internacional demandando tanto a organismos privados como a los gobiernos de todas las naciones un incremento en los fondos destinados a varios tipos de enfermedades que producen mal olor corporal. Esta demanda de fondos incluye, aunque no de manera exclusiva, a la Trimetilaminuria (TMAU), una enfermedad devastadora para la vida, con el fin de encontrar un tratamiento efectivo y una cura.

Entendemos que al firmar esta petición, está usted de acuerdo en que se necesita una mayor concienciación social sobre la Trimetilaminuria (TMAU) y otras enfermedades que producen mal olor corporal, así como fondos destinados a estas patologías y un tratamiento para las mismas. Son enfermedades más prevalentes de lo que se piensa. Por favor únete a este esfuerzo que hacemos.

Nuestro objetivo es conseguir al menos 50.000 firmas en todo el mundo para que sean dadas a los legisladores de tantos países como sea posible, a las Naciones Unidas, a organizaciones científicas/médicas, y a instituciones de educación primaria, secundaria y universitaria de todo el mundo.
De parte de nuestra comunidad internacional, estamos profundamente agradecidos por su participación.

El Blog de MEBO (inglés)
El Blog de MEBO (español)


Monday, June 20, 2011

Not everyone who signs this Petition necessarily suffers of this condition. Nonetheless, all are supporters of our cause.
MEBO Research is most grateful for the support received in only five (5) days, during which time the Petition for Raising Awareness of systemic body odor and halitosis conditions has been in place for signatures. This Petition will be used to support any member of our community who wishes to approach any government agency, private institution, legislators, and/or international entities, such as the United Nations, to promote this cause, as stated in the Petition.

body odor petition
All sufferers, family and friends, and any other persons who support these objectives are welcomed to participate.

Not everyone who signs this Petition necessarily suffers of this condition. Nonetheless, all are supporters of our cause.

The signatory may select whether to display or not display his or her signature publicly.

On behalf of the whole body malodor community, our heartfelt gratitude goes out to all signatories who participate.


María de la Torre
Executive Director

A Public Charity

www.meboresearch.org

maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)


Sunday, June 12, 2011

body odor petitionMEBO Research invites all readers of this blog to please participate in MEBO’s International Raising Awareness Campaign of systemic body odor and halitosis conditions by signing the Petition created for this purpose. By signing this petition, you become part of the solution, taking action to change the lives of all sufferers around the world, and striving to ensure that our children and our children’s children will live carefree and happy lives, without the suffering these conditions cause.

Only your first name, last name and your email address are required to create your signature. If you would like to state your country, you may click on “Outside,” and select your country. This will then represent a clearer indication of the international nature of this petition.


In order to ensure that this petition reaches all sufferers from around the world, we ask the signatories whose native language is not English, to please translate it and to notify MEBO of the forum in which the translation of the petition will be hosted, so that it may be posted on the right sidebar of the Petition. For instance, the translation into Spanish is hosted in MEBO’s Spanish Blog, Olor corporal y halitosis.
In an effort to assist all participants with a better understand this petition, Google Translate Application is available for your use, and located on the upper right section of this document.

On behalf of our international community, we are profoundly grateful for your participation.


María de la Torre
Executive Director

A Public Charity

www.meboresearch.org

maria.delatorre@meboresearch.org
MEBO's Blog (English)
El Blog de MEBO (español)

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